Surgery day

Monday, September 29th, was surgery day. I had previously requested the whole day off of school and found a sub. We didn't receive instructions about the surgery until the Friday before, when we learned that we didn't check in at the hospital until 2:30. At that point, I could have cancelled the sub and my time off and requested a half day instead, but it seemed like more of a hassle to go through the process, so settled for taking the whole day off.

We were told to give Marie a bath and put her in clean clothes to reduce the risk of infection at the surgical sites, so we did that in the morning. I was allowed to feed Marie until 11:30, and then she was only allowed to have Pedialyte until 1:00. When I gave her her last feeding, I was a little nervous because she didn't seem super hungry and wasn't eating too much. I gave her some Pedialyte around 12:20 but she didn't care for it and only drank around an ounce.

That morning we also received a phone call from the ophthalmologist, who asked us if we wanted to proceed with the procedure because our insurance wouldn't cover the amniotic membrane transplant, which would act as a bandage for the eye procedure. When we had received the letter from our insurance a couple months prior, we called the eye doctor's office and were under the impression that they were going to appeal it for us. So receiving this phone call the morning of the operation was a little stressful! Jacob called our insurance company that morning and they said we had a certain number of days from the time the claim was denied to send in an appeal, but to expect the claim to be denied. We decided to go ahead with the operation anyway because I had already taken the day off and because the surgery had already been rescheduled twice at that point.

Right after checking in.

The skin tags on this ear are less noticeable.

We arrived at the hospital and checked in right at 2:30. Somebody came to check her vitals and we changed Marie into the hospital clothes. A nurse came to examine Marie to make sure she was healthy enough to proceed with the surgery. We were a little nervous because Marie had been coughing off and on the previous two days, and we were hoping that wouldn't be cause for them to cancel the surgery. Everything checked out, though, although they had a hard time getting a blood pressure reading. Marie was starting to get fussy, as she was getting hungry and tired. Jacob kept blowing on her stomach to try to cheer her up, and Marie alternated between laughing and crying.

We were eventually taken to the pre-op waiting room, where we were told that the surgeon was behind schedule and instead of having her surgery start at 4:00, it might not start until 5:00 or 5:30. This was especially disheartening because Marie was practically starving already and we weren't allowed to feed her still. We closed off an area of the room with a curtain and tried to calm her down. I may or may not have started crying as I was holding Marie, because I felt awful that she was hungry and I couldn't explain to her why I couldn't feed her. After a while Jacob took her and managed to get her to fall asleep in about two minutes. We put her on a cot as she napped, and I started grading some papers that I had brought with me.

Around 4:30 or so the anesthesiologist came by and told us what he was going to do: place a breathing tube, give her gas to fall asleep, give her an IV, etc. Then the ophthalmologist came by and explained her procedure as well. Since Marie was having two surgeries, they were able to switch the order of the doctors and they'd be able to start sooner than expected. The plastic surgeon also came by and quickly marked the areas he'd be operating on with a purple marker. We signed some consent forms, and by 4:45 we took Marie to the entrance of the operating room where we handed her off to the anesthesiologist.

We then went to a different waiting room, where we were allowed to eat. (No one was allowed to eat in the check-in or pre-op waiting rooms, as the patients had to fast and that would be unfair to them.) We had packed some sandwiches, granola bars and apples, so that became our dinner.

About an hour or so after Marie went into surgery, the ophthalmologist visited us and said that the surgery went well. She was able to remove most of the small mass (dermoid cyst?) that was by the eyelid, as well as reattach the lids to the bone and each other. She was also able to manage to complete the procedure without the amniotic membrane transplant, which meant we didn't have to worry about paying for it out of pocket. She went over the instructions to care for the eye (ice packs for the first 3 days, warm compresses thereafter, and eye ointment three times a day), and then she left. At this point we were waiting on the plastic surgeon.

Before too much longer, the plastic surgeon came out and told us that the skin tag removal went well. He put Marie in arm restraints so she wouldn't try to scratch at her stitches. He told us to keep the area dry for 2 days and to schedule a follow-up visit in two to four weeks.

At this point, we had to wait for Marie to wake up from the anesthesia, get her breathing tube removed, and have her vitals stabilized before we would be able to go in and see her. We were told it might be half an hour or so before that happened. Eventually the receptionist went home for the day, so she informed us that when the phone rang, we could answer it and if it wasn't for us, to call out the name of the patient to the room so the appropriate parents could get on the phone.

After only 15 or 20 minutes, the phone call came that we could go see Marie! She was resting on a bed that seemed pretty large for a baby, and her arms were spread straight out to her sides. She had a plastic eye patch taped to her face, and her eye looked pretty bloody, which we were told was normal. She was crying weakly and she seemed pretty groggy still.

I was able to feed her, and she ate well, despite us being told that most babies aren't coordinated enough to really eat after surgery. She fussed a little bit, but for the most part she was a champ, even when the nurses had to take her blood pressure again. We had to wait for her IV transfusion to be completed, but after an hour or so a nurse went over the discharge instructions and said she would take us to the pharmacy to pick up the prescriptions so we could go home.

We were looking forward to going home, because it had been a long day, but at the pharmacy we learned that one of the doctors forgot to sign the prescription for the painkiller, and she had already left for the day. Since hydrocodone is a controlled substance, the on-call doctor was unable to just call it in -- the prescription had to be physically signed. That doctor had said he (or she) would try to make it down as soon as possible, but s/he was at a different hospital and it had already been half an hour since s/he said that. Our nurse, who was pretty amazing, said she would walk the prescription over to that other hospital and get it signed so we could fill it. We went back to where we were waiting when Marie came out of surgery and continued to wait.

Marie was getting fussy, because she was tired, and I was getting grumpy, because I was, too. We ended up waiting over an extra hour to get the prescription filled. By the time we got home, it was almost 10:00. I was exhausted but still had to pump because I stubbornly refused to do so at the hospital (mostly because I didn't want to ask anyone where an appropriate location to do so would be). After pumping, I changed Marie's diaper, and for the first time in months she peed while her diaper was off, soaking her pajamas. This meant we had to clean her up, take off her arm restraints, change her pajamas, and put her arm restraints back on before we could go to bed. We also had to give her a dose of Tylenol to stay ahead of the pain -- we were to alternate between Motrin and Tylenol every three hours. We finally got to bed around 11.

Overall, Marie has been great. We kept her on pain medication for the first two or three days, and we never did give her the prescription pain killer that we waited so long for. But of course. She is not a fan of getting the eye ointment applied to her eye, nor to putting the eyepatch on or taking it off. She doesn't seem to mind the arm restraints too terribly, though recently I've been keeping her out of them as long as she's wearing the eye patch. She had a follow-up with the ophthalmologist last Monday, and her eye isn't infected, which is good. Her incision is still pretty pink, and the stitches from her skin tags have yet to dissolve. Or maybe they have, but they've been covered in super glue or Dermabond or something which is stubbornly clinging to her skin still. (Which is all well and good, I suppose. The edges are just barely starting to peel off, but we're leaving it alone.) She's happy and healing nicely! We sure love our Marie!

A couple days after surgery.

Almost two weeks after surgery.

In which I paint myself in an unflattering light

When Marie was born, the first thing that Jacob and the doctors noticed was her copious amounts of dark hair. The first thing that I noticed when they placed her on my chest was a mysterious blob on her cheek. "What is that thing?" I wondered to myself. I felt ashamed as soon as I had the thought. I had just given birth to a baby that we had hoped and prayed for, and instead of marveling at the miracle that we were given, I was noticing an imperfection.

The blob on her cheek turned out to be a skin tag, one of five on her face. The other four were located right by her ears, two to a side. Her right eyelid was also formed slightly incorrectly; the top and lower lids weren't attached and formed a curved shape instead of a point.

These two factors -- the skin tags and the eyelid -- caused the doctors at the hospital to tell us Marie may have a condition called Goldenhar syndrome. We were told the syndrome is associated with kidney failure and hearing loss, and they ended up whisking Marie away to conduct a renal ultrasound.

Want to stress yourself out? Try Googling "Goldenhar syndrome" alone twelve hours after giving birth while your husband and baby are elsewhere in the hospital. Tears streamed down my face as I saw images of children with facial deformities and read about the various symptoms.

The ultrasound showed that Marie's kidneys functioned normally, and she passed her hearing test, so those were both positive things. An ophthalmologist came to examine her eyes (which involved propping her eyelids open with some device and caused both Marie and I to sob), which revealed that the actual structure of the eye was fine. We were given a recommendation for a follow up visit with an eye doctor at four months and went home.

Around the time Marie turned two weeks old, I was a wreck. I was convinced she had jaundice, was worried that she had Goldenhar syndrome, and was paranoid about taking any pictures of her that showed her skin tags. I was self-conscious for her; I didn't want friends or strangers to look at Marie's face and wonder what was wrong with her. I tried taking pictures that only showed the left side of her face or using her clothes or a blanket to cover the skin tags up. I was jealous of mothers whose babies were born free of abnormalities. I loved (and still love!) Marie, don't get me wrong. But I hated the idea that others might form judgments about Marie based on her skin tags and didn't think it was fair that my sweet baby had birth defects.

At her two-week appointment, we received a recommendation for a plastic surgeon. We were able to make an appointment with him when she was about a month old. He examined her, said the skin tags were actually called "accessory tragus," and then said that she did not have Goldehnar syndrome.

What a relief! The past month of angst and worry melted away as we learned that Marie's "symptoms" were merely cosmetic and could be fixed with surgery.

On a side note, throughout my pregnancy we were unable to see Marie's face on any ultrasound we received. I'm not sure whether the skin tags would have been apparent on an ultrasound, but I do think this was a blessing in disguise. If I'd had to worry about the possibility of our then-unborn baby having Goldenhar syndrome for months on end, I'm not sure how I would have functioned.

We tentatively scheduled a surgery date with the plastic surgeon, and when we met with the ophthalmologist three months later, she agreed that she could coordinate schedules with the plastic surgeon so Marie would only have to go under anesthesia once. We ended up rescheduling several times due to various circumstances, but last Monday surgery day was upon us.

Stay tuned for part two of the saga, surgery day.